Thursday, September 1, 2011

seize the day, literally.

In July, I had a seizure. Ya, seizure. Let me start off by first just saying yowza.
Now, maybe some of you have had one already. Or maybe you haven't. Maybe you're thinking ohmygoshyoumustbeareallybaddiabetic.

Well, what's a Really Bad Diabetic, anyway?!
Is it someone who doesn't 'do what their told'?
Someone who doesn't check their blood sugar?
Someone who refuses to take insulin if they need it?
And these are just the basics.

What about all of the complicating factors that go into being a person with diabetes---and a person who cares about their disease a lot, at that. I honestly believe that the people who engage and deal with this disease every day and keep it under relative control are those who see how complicating it is to their lives and those around them the most. You find yourself trying so hard to own it, control it, tell it how it's gonna be, that you end up being the person that sometimes feels like they can't take anymore. Of course, as with anything else you've given the finger to---whether from burn-out or just plain apathy--- if you've stopped caring, you're trying not to think about it. This works. For a time.
But I care. I really do. That's what bothers me about the seizure the most. It wasn't a result of my being reckless with insulin or checking my BG or any other diabetic-related matter.
Do I sound sensitive?
Well, I am about this situation, I've realized. Because I work so hard at keeping this disease balanced. Trying to control it, you know? Well, sometimes, diabetes just feels like it's got control over you no matter what you're doing so right.

Having said that first, now let me get into what happened:

I had just finished breakfast and nursing my son (I am a full-time breastfeeding mama to my superhealthy son right now) and our family was headed to the local farmer's market, like we do every Saturday during the growing season. I checked my BG in the car right before we got out and headed over to shop and stroll. I was in the mid-80s with about a unit on board. Not too shabby, so I drank a juice, planning on buying a delectable little snack (like we normally do) when we got there. As we were getting ready to walk over, I asked Matthew, my partner, if I should just wear our son (I'm big into babywearing). He said, "Na, I'll just carry him today". By the way, they both have the same outdoorsy hat and it's so.freaking.cute. I think he just wanted to show Littlebird off, haha.
Good thing.
Looking back now, as we did our initial shopping, I was starting to lose my mind. I was buying things without even thinking about why (3 tiny tomatoes? what the heck was I planning on doing with those exactly?) I usually have a good idea of what I want to buy to make for dinners that week and man, was I off. As we made our way around the bend (almost to the snacky-food area!) I saw an old friend and simply said, "heyhow'sitgoing?" and kept walking past her (she later told me it was as if I didn't recognize her). The last thing I remember is thinking I was tripping and going. "Oh, wow". Scary.
Of course I wasn't exactly present while I was having the seizure, but from what I was told, this is what happened: I started to fall in that "tripping" way like I said, but kind of on a woman (poor woman and my dead weight!) and she kindly attempted to break my fall. But I just fell. When I hit the ground, clearly seizing, not just passing out, people made some space for me. Serendipitously enough, an ER doctor was doing his shopping for the week too and just so happened to be passing by (I'm always amazed at how lucky I've been in life, yeesh!) so he stopped to assist. He said I only seized for about 2 minutes, which is a safe-from-damage number, neurologically speaking. When I came to, the crowd dispersed (good lord, how embarrassing) and because we were next to the stand selling pies, the man behind it starting shouting "hey, you wanna buy my pie?!" Um, no. We don't. want.pie.right.now. Sir.

It really was the perfect place for such an er, incident. The paramedics were already there and just helped me up and they decided to transport me because it was my first seizure ever. Even though they realized I had type 1. To be honest, it's all still blurry from after I woke up all the way to being put into an ER exam room. I'm not sure how well I would've been able to walk to the car, etc---had they decided not to transport. The rest of that day and the next two were all pretty foggy and dream-like, actually.
It took an hour or so for my BG to actually come up and stay up. They gave me good old Tang in the ER and even made me eat half a sandwich and my BG was still in the 70's! So it probably was the safest bet to not just 'sit up, relax, head home'. I was pretty bummed we had to cancel our brunch plans with awesome friends, though. :(
One of the hardest things about it all was the post-muscle-aches. My whole jaw was sore from clenching (every muscle in your body contracts during a seizure. Nice.) and I had a lot of back pain. Even my legs hurt; like I'd been running and out of shape or something. But it eased up in the next day or so. Phew. Thank god for epsom salt baths.
So I know you're wondering, How did this happen?!
Apparently, type 1 diabetic nursing moms are particularly at-risk for seizures. The risk combo of going low from nursing, constant change in how the body processes food, and of course all our fave: female hormone interactions can create what my CDE called so eloquently "a perfect storm of events". Boy, was she right. That day, I'd just eaten breakfast, nursed, used my brain at the farmer's market (which always causes me to burn glucose like crazy) and all the walking, too---yeesh, it's no wonder I just went ahead and passed out.
I just wish someone would've um, you know, WARNED ME.
Even a little bit. About the whole "type 1 diabetic nursing mothers are at high risk for seizures" thing. Ya, that particular warning would've been a real help, I think. I dunno, maybe that's just me. ;)
But, there are so many warnings given to those of us living with this disease. I think good CDEs find themselves not wanting to become that person. You know the one. The person always warning you about being a diabetic. How a 'good' diabetic is, was, and always shall be. Ya, that one. Riiiiight.
So I'm getting back on track. I have a whole new respect for low blood sugar I didn't think possible because I never let a low go (hey, that sounds kinda cool) and have tons of kiddie juice boxes all over the place. However, that blasted day, I only had one and didn't follow it up immediately like I usually do with some carb with protein type snack I keep in my handbag to keep from dropping again too quickly. Oy.
The following week I rode a bit high on my numbers because, frankly, I was terrified out of my mind of it happening again. Like when I'm driving with my little one in the car. :/
Then, my CDE and I started to slowly work our way back to a more normal glucose range safely. I'm still struggling with the lows, but that may now be due to my breastmilk changing. Ya, no one tells you that, either. Breastmilk changes in its nutrient content throughout that first year depending on the baby's needs: sometimes it's higher in fat, sometimes its water content is high for greater hydration purposes, etc.
But I want to make it very clear that I'm happy with my decision to do what is called in the U.S "extended breastfeeding" [insert cackle here because in other cultures it's just called, er, feeding your baby]. It's always been really important to me to provide the wonderful nutrients and immune-regulating properties in breastmilk to my child[ren] for as long as their bodies needed/wanted it (aka, baby-led weaning/solids) and so far, so good. Did you know the immune-regulating properties in breastmilk actually increase after baby's first year? Good enough incentive for me, being a person with an auto-immune disease trying to do the best I can to regulate my kiddo's immune system---um, thanks!
So here I am, doing my best, but sometimes, if this disease was a psycho ex-boyfriend (er, none of mine are psychos, just boring, mostly) I'd like to go after it all knuckle-busting-style and beat the royal crap out of it. But I can't. I just can't. As close as it is to me, every.single.flippin'.day---I can't beat the crap out of it. I can only work my arse off at a friendship that is, at best, 1 and 3/4 sided. And that's on a good day.
But...have I mentioned how so dang worth it all the craptasticness of it is, because my little guy is healthy and happy---and mostly, short of a couple of bruises from falling, so am I?


7 comments:

HM said...

Hey Em-I'm glad you're doing better! Thanks for sharing your experience with us all.

Also, I think I'm gonna make you a shirt that says, "I never let a low go." :)

birdy said...

aw, i love this idea, lol!!

Scott K. Johnson said...

Hey Birdy, what a sucky situation to go through. I'm sorry.

And you're so right, bad stuff, like this, happens to so many that are doing so much to live well with diabetes. There's no win, and it's a sucky thing.

I hope it helped, at least a little, to write about it. I always find that doing so helps me "process" mentally, in a way.

Wishing you and your family all the best, and NO MORE SEIZURES! :-)

emily said...

thanks scott; you're awesome---as always! <3

Sysy Morales said...

OMG I'm so late in reading this but OMG! I'm so sorry you had to go through this! You know, I never heard that either (about nursing and seizures from lows) and man should that info really be out there! I'm glad you blogged about it, who knows how many this will help. Anyways, so scary...but glad you're ok! I've never had a seizure from a low but I sure fear the day. Especially since I spend all day alone with the kids-something you know all about. Well, may this never ever happen to us while we're along with the kids. Take care and thanks for sharing.

sugarstork said...

Hi Emily. Thanks so much for sharing your story - wow! I can't even imagine how scary that was. Can I ask you for a bit of detail though? How long would you say you were walking around the market after testing? An hour? Two? I was recently diagnosed (at age 30) and I know I need to treat lows "quickly" but none of my doctors seem to know how fast a low can become something much worse. So, just curious what your experience was. Thanks in advance!

kate said...

omg! just came across your blog looking for T1 pregnancy experiences - so glad you are ok. The part of this all that I am most scared of (I am 22 weeks pregnant) is post-partum. This is baby #2 for me, so I know how difficult it can be.

Hang in there. Take good care of yourself. xo